Globally, there is increasing emphasis on the importance of understanding the ways in which social inequality and injustice impact individual and community mental health. Set in the states of Uttar Pradesh and Uttarakhand, India, this thesis examines the complex relationships between individuals, communities and the social environment in relation to mental health. North India is characterised by stark gender and socio-economic inequalities and social exclusion for people with psycho-social disability (PPSD) and mental health services in these study areas were essentially absent. Community mental health competency means people are collectively able to participate in efforts to promote, prevent, treat and advocate for mental health. This thesis reflexively examines the presence and absence of community mental health competence in the upper Ganges region.

Methods

A mixed methods approach allowed for a multi-level examination of community mental health competence, and generated four sub-studies. In-depth interviews with thirteen PPSD and eighteen caregivers in Bijnor and Saharanpur (Uttar Pradesh state) were carried out in 2013 providing data for qualitative analysis. These data were analysed using qualitative content analysis to examine experiences of exclusion and inclusion of PPSD in sub-study I, and thematic analysis to examine the gendered experiences of caregivers in sub-study II. A community based sample of 960 people in Dehradun district (Uttarakhand) were surveyed in 2014 to examine the prevalence, treatment gap and social determinants of depression in substudy III, and the attitudes and preferred social distance from people with depression and psychosis were investigated in sub-study IV. Multi-variate regression analysis in both studies was conducted with Stata software Version 13.1.

Results

Within the domain of knowledge, relatively low community mental health literacy, a diverse range of explanatory models of mental health, and creative and persistent efforts in helpseeking were the themes identified. Within the domain of safe social spaces, social exclusion was harsh and prevalent for PPSD, with contrasting sub-domains of belonging, social support, social participation and ahimsa (non-violence). Women were disadvantaged more than men in most spheres of caregiving.

Social determinants of depression with an adjusted odds ratio of more than 2.0 included being a member of the most oppressed caste or tribal group, having taken a recent loan, and not completing primary schooling. The prevalence of depression was 6.0% in the community sample, and there was a 100% treatment gap for counselling, and a 96% treatment gap for anti-depressant therapy, even though 79% of those with depression had visited a primary care provider in the previous three months. Social determinants of health and access to care are proposed as additional domains of community mental health competency. The prevailing gender regime that values males and disadvantages women influenced every domain of community mental health competency, particularly increasing caregiver burden, social exclusion and experiences of physical violence for women.

Conclusions

In this thesis I have refined and strengthened a conceptual framework that portrays community mental health competence as a tree, where foundational roots of social determinants of mental health support four branches depicting access to care, knowledge, safe social spaces and partnerships for action. This tree model proposes that all five domains must operate in unison to support action for community mental health involving: development of community knowledge; promoting social inclusion, gender equality and participation; addressing upstream health determinants; and increasing access to mental health care.

OBJECTIVES: This study sought to use a population-based cross-sectional survey to describe depression prevalence, healthcare seeking and associations with socioeconomic determinants in a district in North India.

SETTING: This study was conducted in Sahaspur and Raipur, administrative blocks of Dehradun district, Uttarakhand, in July 2014.

PARTICIPANTS: A population-based sample of 960 people over the age of 18 years was selected in 30 randomised clusters after being stratified by rural:urban census ratios.

PRIMARY OUTCOME MEASURES: The survey used a validated screening tool, Patient Health Questionnaire, to identify people with depression, and collected information regarding socioeconomic variables and help-seeking behaviours. Depression prevalence and health seeking behaviours were calculated, and multivariable logistic regression was used to assess associations between risk factors and depression.

RESULTS: Prevalence of depression was 6% (58/960), with a further 3.9% (37/960) describing a depressive episode of over 2 weeks in the past 12 months. Statistically significant adjusted OR for depression of more than 2 were found for people who were illiterate, classified as Scheduled Caste/Tribe or Other Backward Castes, living in temporary material housing and who had recently taken a loan. While over three quarters of people with depression (79%) had attended a private or government general medical practitioner in the past 3 months, none had received talking therapy (100% treatment gap) and two people (3.3%) had been prescribed antidepressants.

CONCLUSIONS: There are clear associations between social, educational and economic disadvantage and depression in this population. Strategies that address the social determinants of depression, such as education, social exclusion, financial protection and affordable housing for all are indicated. To address the large treatment gap in Uttarakhand, we must ensure access to primary and secondary mental health providers who can recognise and appropriately manage depression.

Stigma is an important contributor to the large treatment gap for people with mental and psycho-social disabilities (PPSD) in India. Social distance as assessed by willingness to engage in relationships with PPSD is a proxy measure of stigma and potential discrimination. In North India, investigations of community attitudes towards PPSD have been limited. To describe attitudes towards people with depression and psychosis, a community sample of 960 adults in Dehradun district, India from 30 randomised clusters, was surveyed using a validated tool to assess social distance, beliefs and attitudes related to mental illness. Participants preferred greater social distance from a person with psychosis than a person with depression. Beliefs and attitudes around mental illness were diverse reflecting a wide spread of belief frameworks. After controlling for confounding, there was increased social distance among people who believed PPSD were dangerous. Factors that reduced social distance included familiarity with PPSD, and belief that PPSD can recover. Attitudes to PPSD, stigma and social distance are complex and likely to require complex responses that include promoting awareness of mental health and illness, direct contact with PPSD and increasing access to care for PPSD.

BACKGROUND: Social exclusion is both cause and consequence of mental disorders. People with mental disorders (PWMD) are among the most socially excluded in all societies yet little is known about their experiences in North India. This qualitative study aims to describe experiences of exclusion and inclusion of PWMD in two rural communities in Uttar Pradesh, India.

METHODS: In-depth interviews with 20 PWMD and eight caregivers were carried out in May 2013. Interviews probed experiences of help-seeking, stigma, discrimination, exclusion, participation, agency and inclusion in their households and communities. Qualitative content analysis was used to generate codes, categories and finally 12 key themes.

RESULTS: A continuum of exclusion was the dominant experience for participants, ranging from nuanced distancing, negative judgements and social isolation, and self-stigma to overt acts of exclusion such as ridicule, disinheritance and physical violence. Mixed in with this however, some participants described a sense of belonging, opportunity for participation and support from both family and community members.

CONCLUSIONS: These findings underline the urgent need for initiatives that increase mental health literacy, access to services and social inclusion of PWMD in North India, and highlight the possibilities of using human rights frameworks in situations of physical and economic violence. The findings also highlight the urgent need to reduce stigma and take actions in policy and at all levels in society to increase inclusion of people with mental distress and disorders.

Purpose: People with disability in rural India face multiple barriers accessing healthcare; our hypothesis is that children with intellectual disability suffer the same but little is known about the barriers faced by them. The objectives of the study were to identify the health seeking behaviours of families with children with intellectual disabilities and the barriers they faced accessing healthcare.

Methods: This qualitative study involved interviewing caregivers of children with intellectual disability from a pre-existing community development project in the Sahadoli Kadim block of rural Uttar Pradesh. Semi-structured interviews were also conducted with the local practitioners frequented by these caregivers.

Results: Barriers identified were grouped under cognitive, structural and financial barriers which were found to be consistent with the Health Care Access Barrier Model (Carrillo, et al., 2011; WHO, 2011). Cognitive barriers included caregivers being unable to identify the complex health needs of their children. Caregivers lacked appropriate knowledge of intellectual disability, with doctors failing to educate them. Structural and financial barriers encompassed poor availability of healthcare providers and contributed to poor access to specialists. Caregivers had no information about government financial aid and healthcare providers did not refer them to these.

Conclusion: Children with intellectual disabilities are forced to live with a poor quality of life because of cognitive, structural and financial barriers they face in accessing health care. Results are specific to children with intellectual disability in rural Sahadoli Kadim and could be used to inform policies and strategies to reduce disparities in health care access for these children.